Riding for Roses

Delayed Intensification has a built-in one week pause in the middle to allow for the possibility of low counts. Last week, Spencer had low platelets and severely low ANC at 300. This week the platelets are recovering and are up to 120,000 which is above the minimum to proceed. However, his ANC is 195 and needs to be over 1000. This is expected. Today was the checkup during the built-in pause week. One of the chemotherapy medications can also cause the need for more plasma and we ran the tests for that today. Spencer wanted to go home and eat pizza before the results were in so we did a little shopping and had lunch before we got the call that he needed to come in and get plasma. Fortunately, it is not too far from home, so we are spending the afternoon at Specially for Children with Spencer passed out from Benadryl while Rachel and I work, wishing for an open wireless network at Children’s Hospital of Austin.

Spencer has been fatigued and having mood problems from the steroids all week. He is working as hard as he can to control the crying and tantrums and doing a spectacular job. Early in the week there were a few tough times, but the last few days he has been managing to deal with the intense emotions without blowing up. Perhaps I can get him to teach me the trick.

This has left me attending Tour Watch 2005 less than I had desired and I actually just left the table there for the last two days and have been hoping it doesn’t get too badly trashed. So far, it sounds like I lost one plastic paper holder to the wind and am otherwise doing OK. This afternoon (if we get done early enough) or tomorrow, I will fix the damage and resupply.

Today was Spencer’s last day on steroids (dexamethasone) so we expect his mood to get better, his appetite to decrease, and his energy to increase. Oddly, he actually lost weight this week even though he was constantly hungry. He had huge cravings (mostly for dairy and specifically cheese pizza with buttery garlic sauce from Papa John’s), but he found the actual food did not satisfy the craving and so he was not eating much.

The hardest thing about this week is watching him be so tired and sad all of the time and none of us having the tools to cope with it. Next week, we expect that to start going away. We have an appointment for next Friday to have a lumbar puncture at start ARA-C, the next in the list of intensification medications. If counts are back, that will happen, otherwise we pause for a second week.